Amid myriad problems with coronavirus testing, people with symptoms but no diagnosis are finding that online forums can provide some clarity and emotional support.

Gemma Brady was volunteering as a nurse at the Bradford Royal Infirmary in Yorkshire, England, in the beginning of May when she got a moderate headache. She works in an Amber Ward, where patients are awaiting tests results for COVID-19. Later that day, her headache became severe. It wasn’t until 10 p.m. that she really began to feel something was wrong. She says she was shaking, her skin looked mottled, and her temperature spiked. A few days later, the hospital tested her for COVID-19. It came back negative. “It didn’t feel like it made sense,” she says.

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The hospital told her to go to a hospital emergency room for an x-ray to see if she was suffering from an infection rather than COVID-19. When the ER doctors determined that she did not have an infection, Bradford hospital tested her again for COVID-19. Two more tests came back negative. Given her exposure to COVID-19, the health center where she had been volunteering told her to isolate at home under the assumption that she likely had COVID-19, but the test wasn’t picking it up. Soon after, Brady joined a Facebook group called COVID-19 Support Group.

COVID-19 has proven to be a confounding disease, leading thousands of people with symptoms to seek out emotional support and advice from strangers online. Facebook has a total of 4,000 support groups where 4.5 million participants are discussing COVID-19 and its impact on their lives. The COVID-19 Support Group has some 4,700 participants who post frequently about concerning symptoms and ask questions about when they will no longer be infectious.

In the COVID-19 Support Group, Brady found people who shared similar experiences. Several people there reported having symptoms, but when they went in for the COVID-19 test that takes a sample from deep within the nasal cavity, it turned up negative. A few people with this experience said they later tested positive when they took a test that used a sample from inside the lung.

Brady says that since she didn’t have hard evidence that her test may have been flawed, it was helpful to read about other people whose symptoms did not match their test results. “I feel like my negative swab was in light of me not having upper respiratory symptoms. The burning and discomfort was further down in between my sternum and my lungs,” she says.

I feel like my negative swab was in light of me not having upper respiratory symptoms.”

Gemma Brady

There have been numerous problems surrounding testing for COVID-19. Some tests may have been administered poorly as nurses and doctors learned how to effectively take samples, and some have expressed concern about a particularly high rate of false negatives. While Brady has had the benefit of getting multiple tests, not everyone has been able to access one. In some countries, such as the U.S., COVID-19 tests have been hard to come by depending on where a person lives and what health system they go to. Especially in the early days of the COVID-19 outbreak, tests were sometimes reserved for only the most severe cases. Some people have come to support groups because they are experiencing symptoms but have not been able to access a test to confirm they have COVID-19.

In the support group, people share symptoms that were not as frequently associated with COVID-19 early on, such as body aches, headaches, and lethargy. The group’s administrator, Jay Sinrod, has also held polls to help people get a sense of the most common symptoms among participants. He and other moderators in the group have also been vigilant about taking down political content, misinformation, and conspiracy theories, which he says are not welcome.

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Understanding COVID-19’s symptoms has been difficult for both doctors and patients alike. The disease appears to manifest in a variety of ways, though much of the research is not firm. Strange rashes and toe lesions are a potential sign of the virus. Anecdotal evidence has lead researchers to consider a link between COVID-19 and stroke. For those with severe symptoms, the disease may incite a cytokine storm, an immune response that can be very damaging to the body.

There are now several digital efforts underway to better identify COVID-19’s symptoms. In April, Massachusetts General Hospital launched a COVID-19 study app in an effort to suss out symptoms, especially in light of a lack of available testing. The hope is that this information will help doctors to better identify COVID-19 and connect people with the care they need earlier.

Others are hoping to bring more clarity to COVID-19 for both doctors and patients. Fiona Lowenstein, a self-described writer, producer, and yoga teacher who runs a queer wellness collective called the Body Politic, launched a Slack group where people can discuss symptoms and speak with doctors in an informal setting. In an op-ed for The New YorkTimes, Lowenstein describes her own frustratingly long recovery process, a fear of relapsing symptoms, and a yearning for more information that simply didn’t exist. These sentiments have been echoed in countless threads online: How long will this last?

At least I know I’m not the only person on this planet.”

Kate Daly

Another little-discussed element of COVID-19 that people in the support group have bonded over is the long-term effects of the disease. “You don’t need a support group for a two-week thing,” says Kate Daly, a software product owner in Pittsburgh. She says she’s been experiencing symptoms for 10 weeks that have shifted from intense breathing difficulty to daily fatigue and low-grade fever. Her first and only test came back negative and she has been unable to get a subsequent test. It is unclear if these symptoms are from COVID-19 itself, some sort of post-viral fatigue, or another illness entirely.

The Facebook support group has been helpful for her as she navigates her ongoing lethargy. “At least I know I’m not the only person on this planet,” she says.

But perhaps what is most frustrating for everyone in the Facebook group, whether they’ve tested positive or not, is not knowing if they are still infectious to others. The Centers for Disease Control and Prevention says that it doesn’t know how long a person remains infectious. The agency only notes that those who are exposed are likely to develop symptoms within 14 days if they were infected. For the time being, doctors are advising anyone presenting symptoms to stay isolated. But these recommendations leave a lot of questions open for those experiencing symptoms.

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“Am I going back to work with a level of immunity? Or am I going back still recovering from a virus and being more susceptible to getting COVID. . . . That’s why I’ve tried to chase an answer, really,” says Brady, who is hoping to continue volunteering as a nurse during the pandemic. But that answer may be a long time off.

Brady says she isn’t likely to get an antibody test until she returns to work, and she can’t return to work until her symptoms clear. At the very least, she can continue visiting the Facebook group, where Sinrod and others post new information about the virus.

“It was useful to see other people had similar experiences,” she says.

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About the author

Ruth Reader is a writer for Fast Company. She covers the intersection of health and technology.